Our baby tested + for anti-bodies

[astuff]

We adopted our son in July at 5 days old.  His birthmom has Hep C and we were told that the transmission rate was about 5%.  So we were really not concerned.  We really did not (still don't) know much about Hep C, all the tests or progosis etc. But we have been doing some reading this weekend. Still, I admit we are confused.

What i do know is that our son tested + for the anti-bodies which i understand may or may not be from his birthmom at this point (he is 9 mos old). According to his pediatrician, it's unlikely at this point that they are from his birthmom, but from what I've read here and on other sites, it seems that her antibodies can be present in his system for much longer.

His pediatrician is sending him for the ALT and RNA tests. I understand that ALT measures liver function but may fluctuate a lot depending on the day etc. And RNA measures whether or not he has the virus circulating in his blood (which I understand = active infection).

What i don't understand is this:

If the RNA test comes back + does that mean he definitely does have Hep C? and if so, does that mean he will have it forever?

And if it comes back negative does that mean he definitely does not have Hep C? or can it take longer to show up? if it's negative now can it become + later?

We are trying not to jump ahead and drown ourselves with worry but it is hard. We worry about what this could mean (if he does have it) for his quality of life and life expectancy being that he is so young. I need to prepare myself by educating myself and his pediatrician was not much help so I am reaching out to you here.

Also, do you think if the next tests come back + that he should see a pediatric gastroentrologist or hepalogist?

Any other info you can provide would be much appreciated.

Thanks!

[Bulldoggergal]

So happy to hear this!!!  It was very hard holding my son down to have his blood drawn...took 4 of us...those babies are STRONG!!  Luckily, he won't remember any of this and you need to put it behind you and forget about it too!!  It's over.

I'm still sorry you had to go through it but like I said...live and learn...it's all a part of parenting (and living!).

It's true about what doctors truly know...they are only human and are only taught so much about soooooo much!!!  That's why the patient has to be their own advocate and as parents, we have to be the advocates for our babies.

xoxoxo,
Jennifer

[GreatBird]

I love hearing good news. Thanks for coming back and letting us know!

[Isobella]

That is AWESOME!!!!!!  Thanks for posting the update.

So happy for you all =)

Isobella

[astuff]

UPDATE

Just wanted to let everyone know that we got the results back and he does not have Hep C......His ALT was normal and the RNA was negative :-)

Doc says we can re-do the antibody test at 18 mos to see if the antibodies have cleared his system.  Since I have read that any RNA test should be repeated I am gonna have him repeat the RNA etst at 18 mos too.

Thanks for all the info and support!

[fretboard]

That is really something that a hospital advised you to have your baby tested at 4 months, I can only think that they must have ideas on a diet that may help in the clearance of HepC, I don't know.

At any rate this is a very troubling situation.  I hope everything ends up well for you and your baby, I am leaving more reading for you.  good luck and God Bless

http://jvi.asm.org/cgi/reprint/82/4/1827.pdf

[Isobella]

Good for you for getting the correct test ordered.  I'll be sending positive thoughts and prayers your way.

Looking forward to some good news from you next week.

Hang in there

Isobella

[GSDgirl]

I am so glad that the nurse was able to get the blood today.  I was almost in tears for the little guy yesterday.  Hope the test is negative!!

Denise

[astuff]

so we went back to the hospital lab this morning.  the lead tech poked his arm but couldn't get his veing to cooperate.  so they called a peds nurse down.  she brought the light to help see under the skin better and tried his arm again.  no luck.  then she tried his hand.  after like 5 mintues of wiggling that one around she finally got some blood, but not enough and it stopped again.  so she ended up having to get the blood from the vein on top of his head.  that worked much better but the whole experience was painful to watch!

ANd I found out his doc had ordered the quantitative RNA test.  I had read that the quantitative test will tell the amount of viral load, but it will only register a # if the number is high enough.  otherwise it could look as though there is no viral load and therefore no virus when there actually is but the # is too low to register.  The qualitative test is much more sensitive and will tell for sure if he has hep C or not.  From what i read he should get the qualitative test.  so I requested that in addition to the quantative (sinbce they could get them both from the same vile).  they called his doc and got that approved.  i am glad I did bc now we will know for sure and he won't have to go thru that again (hopefully!).  they said we should get the ALT results in a day or so and the RNA in about a week.

[astuff]

OK so we went for his blood draw today and after 45 minutes and them finally sticking him once only to get a little blood out and then the flow stopped, we had to leave and we have to go back to try again tomorrow.  it was painful to hear him cry like that - he's not a cryer at all so this was tough.  I had to leave the room at one point (my hubby was there, too) and cried.

I guess tomorrow the peds nurses will be available to come down and do it instead of the lab techs.

hope it goes better than today.

[astuff]

Thanks again!  We are taking our lil man to the lab today to get his RNA and ALT etsts done.  I checked with the lab and they said they can get the blood from a finger *****......when we took him for the antibody test, they poked his lil arm but were not able to find his lil veins so they did the finger *****.  while it took a ton longer, I'm sure he did ok with that.  so we'll see how it goes today.  the pediatrician said he thinks the RNA/ALT tests have to be sent out so it may be at least a week b4 we get the results.  I guess I will just prepare myself (as best as possible) to not expect to hear the results til the end of next week or the beginning of next.

You all have been so helpful in calming me down and educating me!

I just thought of another question (again to prepare myself):

IF the RNA test is positive, is it possible that his system could still fight it off and it may become negative on it's own in a few months?  Or once it's positive it'll be positive always?  Again, he is about 9 months old.

[nygirl7]

the thing is regualr pediatricians like to think they know a lot of alot of different conditions etc but the reality is that they don't.  

You would be absolutely shocked and dumbfounded to find out how few doctors really know ANYTHING correct about hepc and it's treatment.  It's not just pediatricians they all are really in the dark ages.

Good luck we'll be watching to see how this all works out.

[Bulldoggergal]

I agree about most all physicians no knowing...so I guess firing him was a little extreme...at least you have a level head!  

Being a new parent is all about learning from everything that happens...good or bad so just chalk it up to educating yourself (from a reliable? source...not necessarily forums in some cases) and then build onto your parenting experience from there...you've done great so far!!

There are soooooo many things to worry about with kids...I just think that HepC isn't going to be one of them...you don't want to hear about the others (lol!).

The HARDEST part about the HCV test at one year, except for the wait for the results, was having 3 nurses plus me hold a one year old baby down to get his blood drawn from a tiny little vein in his tiny little arm...those babies are STRONG!!  He put up one hell of a fight...and almost won.

xoxoxo,
Jennifer

[lalapple]

also, transmission from mother to child is in single digit percentage.  i recall one of us on here is a mother of several kids before she found out she had hepatitis, but none of her kids tested positive for the virus, only one of her twin girls tested positive for the antibodies, so she's got nothing to worry about!

[lalapple]

hi, i was about 6mo old when i contracted hcv through a blood transfusion before there was a screen for hcv (1993).  antibody test doesn't tell you if you have hepatitis c.  hepatitis c is only spread through blood to blood contact.  that is, if an individual had a cut on their body that is bleeding, an open wound, and came into contact with someone's blood containing active hepatitis virus. there could be a possibility of transmission.  even if transmission happens, you body could have a chance to fight off the virus on it's own within 6 weeks.

like many have already mentioned above, it is very important to get a viral count PCR/ RNA it basically counts how many little hcv viruses are in a certain unit of the blood.  if your kid shows up negative for the PCR/ RNA, then it means he doesn't have hepatitis, so don't worry bc antibodies can't be transmitted.  if he shows up positive for the PCR, then take some time to consider what's the next step to take.  i was diagnosed when i was 15yo and now i'm treating at the age of 19.

[astuff]

Jennifer,
The more reading I do and the more I think about it, the more irritated I am that he even was tested for the antibodies at 9mos old.  The hospital he was born in actually recomended he be tested at 4 mos.  My doc had said wait til 6 mos old.  I wanted to wait til a year so 9 mos was our compromise.  man, do I wish I would have done this research beforehand bc I totally would have waited til after he was 1 y/o.    but I didn't know and I trusted the doc.  the thing is regualr pediatricians like to think they know a lot of alot of different conditions etc but the reality is that they don't.  BELIEVE ME I am going to educate him!!!!  other than this issue though we've had good experiences with him.  It just reminds me of the importance of doing my own homework and I plan on passing the info I have gotten onto my adoption community too so no one else has to be worried like us.

to ease our worry and to know for sure though we are taking him for the RNA test later this week.  Fingers crossed that it comes back negative and we can relax.

[Bulldoggergal]

I WAS TOLD TO NOT HAVE MY SON TESTED UNTIL HE WAS AT LEAST ONE YEAR OLD!!  

A child of a HepC positive woman will ALWAYS test positive for antibodies until they are AT LEAST one year old!

My son was tested at one and a half and it was a very long wait...but tested negative.

You should not have even thought about having a baby tested before the age of one...your doctor should have known that...it has caused you much stress and worrying over what is, I can almost PROMISE YOU, a moot point!!

Your baby will NOT always test positive for antibodies...and it is sooooooooo very rare that the HepC virus is passed from mom to child.  I didn't even know at the time that I had the HepC so no prevention (if there is any) took place.

I've also had unprotected sex with my husband for 20 years and he tests negative!!

PLEASE DO NOT WORRY ABOUT THIS UNTIL THE BABY IS AT LEAST ONE YEAR...MAYBE EVEN TWO YEARS OLD.

I'M SOOOOOOO SORRY YOU HAD TO BE PUT THROUGH THIS!!!  FIRE THAT DOCTOR!!!!

xoxoxo
Jennifer

[Rain6866]

now I cant be sure on all this info i am about to post seeing as my cousin is now 32 and Im 40 so im only remembering what they told me.

When she was little she tested positive for hep B antibodies. But with no viral count. Which means that she cant give blood but she isnt contagious and it isnt hurting her body

I hope I got this story right and in someways it helps you.

[astuff]

Thank you so much for all of your responses.

Can someone tell me is PCR = RNA?  He is having the RNA test (and ALT) done as a follow-up to the + HCV test.  is that the same thing as PCR (viral load)?

So it's my understanding that he shouldn't have even ahd the HCV test done at 9 mos bc his birthmom's antibodies can still be in his system.  Everything I have read has said to wait til at least 12 months (some even say 18 mos) b4 getting tested for the antibody.  I also read that for babies like him where it's known that his birthmom has Hep C that he should have just had the RNA test bc that confirms whether or not he has it.

so am I udnerstanding that correctly?  if his upcoming RNA test comes back negative (and is confirmed by another test) then he is in the clear?

I wish his pediatrician didn't even have us do the antibody test.  he could be causing us to worry for no reason.

Thanks again!

[nygirl7]

I'm not sure where a 9 month old would have gotten hepc from if not the mother - but the where doesn't really matter one bit anyway.  Hopefully he is one of the 20% who will fight it off with their own immune system and all this worry will be a moot point.

As said above hepc is a very very slowly progressing disease. I admit to the fact that I had no idea i had it since my early 20s so I smoked and drank and did drugs and that contributed to the liver damage that I had when diagnosed. I am positive if i had not lived such an unhealthy lifestyle my damage would have been much much less severe.

At least knowing that he had it you could help teach him to live a liver healthy life and not even worry about treating this disease until someday WHEN they do develop an easier more effective treatment.

But as copyman said above - there is a cure for this disease. And it is a slowly progressing disease. So all in all take some peace of mind from that while you wait for the results from the test.

I hope to God that your PCR test is UNDETECTIBLE but if not - take it one step at a time and enjoy your lovely new baby with all of your heart.

[copyman]

from what I have read mothers with hep C can "rarely" pass the  virus to the baby but most of the time the baby will fight off the virus and just have antibodies. Like Isobella said the PCR test will see if he has a viral load. Hopefully he has fought off the virus and just carries the antibodies.
If the RNA test comes back NEG then you can rest assured he is virus free.
As for life expectency everyone is different but most live with hep c for many decades before then even know they have it. for the most part it is a slow moving disease.
Relax your son will be fine....HCV is not a death sentence. There are many more worse things he could have that can not be cured! At least HCV can be cured. The saying goes most people die "with" HCV not "from" it. And the good news is there are promising new drugs in trials right now that will be out in the next few years. Best of luck to your son

[Isobella]

I can share my personal experience with you using what I know about my hep c and that of my 19 year old daughter.  I am pretty confident that some other more knowledgable members will be able to add the scientific stuff.

I am wondering if your son was tested at birth.  Once you test positive for antibodies, you will always test positive...that doesn't change.  Has he had medical procedures, or any other reason for you to believe that he as been exposed since birth?

With me, my daughter tested for the first time at age 18, after I was diagnosed.  Based on risk factors, I am certain (or as certain as I can be) that she was born with it.

The RNA PCR will come back with a number, either indicating a viral load, or an undectable viral load. You are hoping for the latter.  I believe approximately 20% of people are able to clear the virus on their own.  The viral load can fluctuate also.  And it is not an indicator of liver damage.  

Mine went from 2 million to 900,000 between diagnosis and treatment.  A lower viral load may (emphasis on may) mean you are less contageuos (sp) at that point....but a dectable viral load...reagardless of the number...means you have the virus.

My doctor explained to me that when they are born with it, in some cases (emphasis on some) the child's immune system does not recognize the virus as an invader.  Therefore the immune system does not attack it.  That can mean less inflammation and a slower progession.  That has been the case with us.

Quality of life and life expectancy??   In our case, my daughter has a great quality of life...believe me, living the life of Riley....college, travel, everything she could want.  She excercises and eats right....just like we all want our kids to do, right?  Only she takes it more seriously and that's win/win.  

Life expectancy....I am confident that she will live to be a great-great-great grandmother.  She will be treating as soon as the new drugs come out.  She chose to treat before she develops any potential problems from this virus.  Which admittedly, may not occur...or if they do may not occur until much later in life.  

In my family, we feel that is best to get rid of the virus...but whether to treat or when to treat is a hugely personal decision based on many different factors.  We feel our best shot is to rid ourselves of the virus while we are still otherwise healthy.

As far as doctors, if it were me and the PCR test came back with a detectable viral load, I would start interviewing hepatologists.  I say interview, because I feel it is essential in the management of our disease to have a doctor that is up to date on a daily basis with new treatments and research.  Also, my PCP must be willing to work as part of the team with my hepatologist calling the shots and me taking an active part in decisions.  It can sometimes be trial and error to find the right mix.  And I always feel better having a good team-even if we don't yet need them.  Always nice for my peace of mind.

I honestly feel fortunate that I was accidently diagnosed...before I became symptomatic.  I believe I have had this virus between 30-40 years. When I was diagnosed, I had a normal 47 year old liver...as my doctor says...despite all my best attempts to destroy it with wine, lol!!  I was devastated to find that I had passed it to my daughter, but I feel confident in her chances to be cured.

I sincerely wish for your son's PCR to come back undectable.  As a mother I share your concerns.  But I gotta say....there is so much out there that is far worse....you will get through this and you sound like you are already one step ahead of the game by the research you have done.  And MedHelp will be a great asset to your quest for information.  

Please keep us informed....and please keep asking questions.

Isobella